[igonzales21]

#1058865

My 5 year old daughter was diagnosed with GD last year in July, it has been very emotional and stressful. She was put on methimazole 5mg in the morning and 5mg at night to start and beta blockers, after 2 months it sent her into hypo, which then the Dr reduced her dosage to 7.5 mg per day and no beta blocker. She’s now back at hyper, and the Dr put her on 10mg per day. I’m extemely frustrasted with my dr, she doesn’t seem to answer my concerns fully and I’m always leaving her office feeling confused and uneasied. My daughter was been on this new dosaged for about a month and seems to be the same if not more hyper, her eyes are getting bigger, and her glands are huge. I’ve asked her dr what other alternatives there are besides methimazole, and she keeps insisting if it doesn’t go down RAI is the next step. I’ve asked her about the surgery and she’s denied the option, stating she would not referring us to a specialist surgeon because how severe it is, especially for a young child.
I think I might be in some sort of denial, thinking it’s going to be better, but deep down inside of me I know it’s not. I’m making myself psychological sick. I keep reading side effects of RAI and surgery and I just don’t understand why my poor child has to go through it. She’s a twin and her twin sister wants to be just like her, taller and lose teeth… and it breaks my heart to know that she’s different because of GD. My patience is wearing thin, I’m going full time college and I know it’s not my daughter’s fault, but at times I see myself yelling more than understanding.

Sorry for my venting, but it feels good to vent to others that have gone through the samething we are experiencing.

Thanks for you ears! Iris G

[Kimberly]

#1170488

Hello and welcome! I’m so sorry to hear that your family is going through this. The Foundation actually included an article on children and Graves’ in our last print newsletter; if you’d like you receive a copy, you can send your contact info to us at info@ngdf.org. The article was written by Dr. Scott Rivkees and goes through the pros and cons of the three treatment options for children (Anti-Thyroid Drugs, Surgery, RAI). The article mentioned that RAI is not recommended for children under 5 years of age or children under 10 years of age who would require a large dose.

You might also be interested to know there is a Facebook group for parents of children with Graves’. It’s not officially moderated by the Foundation, but we know several of the parents who post there regularly, and they have been great about sharing their experiences with other families. You have to request to join, but the moderators will approve your membership if you share a bit of your story. You can find them at http://www.facebook.com/groups/265484340175004/

You definitely want to feel comfortable with your daughter’s endo as you go through this process. A couple of good referral sites are http://www.aace.com/ and http://www.thyroid.org/.

(Note on links: if you click directly on the above links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

On the AACE site, you might have to scroll down a bit to see the “Find an Endocrinologist” link on the left-hand side of the screen. There is an option to select “pediatrics” as a specialty, but you might have better luck selecting “thyroid dysfunction”.

On the other thyroid site, move your cursor over where it says “Public & Patients” (towards the top center of the screen) and then click on “Find a Specialist.” All of the doctors on this site have expertise in thyroid issues.

Wishing all the best for you and your family!

[snelsen]

#1170489

Hi, I know it is agonizing to have a child with a medical problem. Especially one that is behavioral, plus really not feeling well, plus a twin sibling who is thriving, plus you going to school full time. Everything is complex, and how frustrating to make the efforts to make appointments, and leave with concerns.
Kimberly gave some great references, and i have one thing to add.

I suggest you have all her care managed by a pediatric endocrinologist. I looked up resources in the Phoenix area (so nice to know where you are, ) and I found the following medical group, and they DO have thyroid listed as one of the conditions they manage. Here’s the link:
http://www.pedendophx.com/

I am not sure you are taking your daughter to a pediatric endocrinologist now, but from what you say, it seems that you need a different doc taking care of your daughter.
Have you explored the pediatric endocrinologist world?
do write again
This is a wonderful site, with caring people, you will get a lot of support and suggestions here. We are all patients in different stages of Graves’s or thyroid eye disease (TED.)
Shirley
I am the grandmother of twin boys, one has more issues than the other one, but they both have issues. It is tough.

[igonzales21]

#1170490

Thank you both for your kind suggestions. I’m going to look into the FB group, and the article sounds very informative.
We currently are seeing a pediatric endo, but I’m going to go through and get another opinion on treatment options.
Thanks for listening and taking time to reply ladies!

[Author]

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